On World Down Syndrome Day, What Penny Has Given Me

In honor of World Down Syndrome Day, I was asked to write a short post for Not Alone, a website and blog that aims to support and encourage parents of children with special needs. My post appears alongside three other mothers of children with Down syndrome, as all of us reflect upon how our children have changed us and helped us grow. I wrote:

Our oldest daughter Penny, age 7, has Down syndrome, and through the course of her life Penny has taught me two almost contradictory truths about our common humanity:

One, that basing a person’s worth upon their achievement is problematic for all of us. I threw away the baby books with developmental milestones early on in Penny’s life, and I worked hard to let go of expectations of when she should be able to do specific tasks. But then I realized that I needed to do the same for myself and everyone else. If my identity is based upon my ability, then my identity is always in question. I’m always racing to keep up and desperately hoping to be able to prove myself. Penny has shown me that our identity resides in our belovedness, in the fact that we are loved by God and one another.

Two, that once we know our identity as the beloved ones, we are free to explore our abilities without pressure to perform. Once I let go of expectations of who Penny “must” become, once I let go of the idea that I had been entitled to a certain type of child, she then surprised me by demonstrating her very own particular abilities.

Today, Penny is the beloved one, first and foremost. She also happens to love to read, dance, and take care of her little sister. She loves spelling “medium-hard” words and adding numbers together on her fingers. She loves cuddling with her mom and listening to music with her dad and playing Mary Poppins with her little brother. Penny is the beloved one who loves in return.

That’s in addition to my gratitude for our trip around the world in honor of this day. If you haven’t already, read the posts from Poland, Zambia, and Mexico (and come back tomorrow for a post from Ghana). Finally, later on today I will be posting a link to a guest post I’ve written about what I would say to myself seven years ago.

What have you been given through a person with Down syndrome in your life? What have you learned from them? What have you been able to offer in return?

Amy Julia Becker writes and speaks about family, faith, disability, and culture. A graduate of Princeton University and Princeton Theological Seminary, she is the author of Penelope Ayers: A Memoir, A Good and Perfect Gift (Bethany House), and Why I Am Both Spiritual and Religious (Patheos Press).

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This blog is about discovering and remembering thin places, places where heaven and earth touch, where God seems more readily present, more easily accessed. It is meant to uncover ideas, relationships, points of connection, and moments of deep beauty that draw us towards one another and towards the Holy One.